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was anyone mis-dx for MS and had IV steroids

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Posted 11/21/2011 6:34 PM (GMT 0)
Hello,

I am new here.

Been in the lyme vs. ms debate for about 6 years now.

Due to lesions on the brain and high myelin in spinal tap, neuro doc is leaning toward MS.

We went ahead with a 5 day course of Solu-medrol IV.

I feel that this is the final test - if it helps.. then ok for MS.

If it is Lyme it seems we are guaranteed to get no relief and in fact will probably get worse.

Anyone had experience w/this?

Thanks!

Sandy

Posted 11/21/2011 6:59 PM (GMT 0)
May I ask how you now know it is lyme?
Posted 11/21/2011 10:25 PM (GMT 0)
Hi Sandy and welcome!

Throughout the years soooo many members here were first diagnosed with either MS, Lupus, CFS, and the labels go on only to find out they had lyme..  Lyme is a real bacteria that can be treated, the other "labels" people just live with and suffer.. 

Please get lots of opinions as well as getting tested by a lab called IgeneX (I believe they are the most accurate lab we have in the U.S.):

www.igenex.com

Good luck to you!

Denise

Posted 11/21/2011 11:16 PM (GMT 0)
Folks ...Lyme and MS are two completely separate diseases. One dies not lead to another.
Posted 11/22/2011 12:23 AM (GMT 0)
Yazzer - Whew!!!!! MS scares the you know what out of me....!!!
Posted 11/22/2011 12:38 AM (GMT 0)
But Lyme can sure do a good job of mimicing MS...

And there are some who experience autoimmune issues that were not present prior to Lyme...
Posted 11/22/2011 12:47 AM (GMT 0)
Mimic, yes, but it does not turn into MS. Lyme mimics many other illnesses. Lyme is no picnic but it is not those diseases. Lyme also mimics ALS and many have been falsely diagnosed with same. When they were found to have Lyme instead, their prognosis was much improved.
Posted 11/22/2011 9:08 AM (GMT 0)
Here are some informative articles that may clear this up.

www.lymeinfo.net/multiplesclerosis.html

www.canlyme.com/lymemultiplesclerosis.html


I guess if I had to choose whether to treat for Lyme Disease or Multiple Sclerosis, I would first treat for Lyme Disease and see if there was improvement. The treatment for MS will make the Lyme worse, but the treatments for Lyme won't affect the MS. But that is my totally amateur opinion!

Well, my heart goes out to you, it is difficult enough to be feeling so ill without there being such fogginess concerning your diagnosis and treatment. Have you been working with a Lyme Literate Doctor or just the neurologist?

In many cases, non-Lyme Literate Doctors seem to lean away from Lyme. Do have a look at our "New to Lyme?" thread for more info and resources.

Let us know how the IV leaves you feeling and if you have any more questions! Welcome to the forum.
Posted 11/22/2011 1:54 PM (GMT 0)
The doctor that first diagnosed me after 20 yrs of mis diagnosis told me these ticks carry parasites.
metametrix labs has what I was told the best test but it cost $399.

There are less expensive tests but they insisted I take that one and that was when they sent me for
all the lyme tests.

also make sure there is no mold in your house of school or job. For one in four people who have that
genetic risk association mold will cause ms and lyme symptoms.

It is so hard not to know what to do especially when money is a factor but who ever you see about lyme
if they seem the least bit wishy washy they are not the right doctor to give you the answer.

There are at least 5 coinfections and parasites involved in some cases. All this has to be investigated at once
so everyone has a clear picture before they start doing the process of elimination.

leave no stone unturned. You are obviously a very sensitive being. Even things like air quality and food can either make or ruin your day.
Posted 11/23/2011 6:55 AM (GMT 0)
hello,

i was given a 3-day solu-medrol infusion in february '10 after my neuro suspected MS and it was a horrible experience. i experienced the jolt of energy after the 2nd day but ended up sicker than ever and pretty much bedridden for close to 3 weeks afterwards--unable to eat, stand, etc. my symptoms worsened very dramatically.

like achievinggrace said, MS treatment can make lyme worse--much, much worse in some cases. please proceed with caution.

blessings,
binx
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